I've been taking some time out over the summer, creating memories with my boys before they start school in September. It's such a cliché when people ay it, but you really do wonder where the time goes once you have children.
My pain has been unbearable at times, with good days and bad days continuing over the last few weeks - with not being able to rest since the pain injections- after the chicken pox saga!
I have been learning how to mange and listen to my body effectively. Unfortunately, we haven't managed to travel this year as a family, with everything Covid related, but instead have taken the boys to place's such as, London, museums, the beach nearby and swimming. My pain still goes hand in hand with exhaustion over the last few weeks - the more I do, if I dare to leave the house, socialize or life my life; I pay for it the next day in excruciating pain in my lower back and exhaustion. However I pushed myself hard and as a family we had many lovely days out albeit with the English weather!
That all sounds very negative doesn't it? I apologise, I'm constantly reminding myself that I'm lucky to be alive and how it could always be 'so much worse'. However, I think in any situation when we are reminded how people may have it worse than we do - I think we need to remember its all relative, no one else has to suffer whatever it is you are suffering right now and no one knows exactly what my pain feels like, aside from me. We could concentrate on others misfortunes but before anything else, we do need to focus on ourselves, whether it be physical or mental pain, as after all, we cannot pour from an empty cup.
On a positive note, I have also been seeing a physio. I go once a week and there I do stretches, excersise's and endure sports massages which aren't in any way as relaxing as they sound. After four sessions, my physio said how far I have come and how much progress I have made - I cannot see or feel it myself but I have taken his word for it.
However, a few weeks before I started, I went to see my nurse and after a few exhausted tears (from me, not her) she sat me down and said how I need to understand and accept that I will probably have chronic pain for the rest of my life and that by getting frustrated at myself for not being able to do the things I did two years ago, I'm setting myself up to fail. She helpfully drilled in to me that I will never be that person again and need to come to terms with the new life ahead of me, albeit living with chronic pain.
Imagine that for a slap in the face! I came home afterwards and cried more than I had done in two years, it had been spelled out for me. finally. My mental health at its lowest and just sat there thinking; 'well, that's it now, I'm in pain forever and my life is over.'
I had two routes to take - 1. I could become a hermit so as not to flare up the pain, sit within my suicidal thoughts that maybe my family would be better off without me holding them back or 2. I could live my life and work on my physical strength, using the pain as reminder to listen to my body.
I went with option 2.
So, after discussing all this with my physio, he said that yes, he could not guarantee that I would not be in pain for the rest of my life, BUT, he could get me to a stage where I may not need my coccyx cushion anymore and he believes that he could get me running again in a year!
A YEAR! That news was amazing to hear, as someone who ran everyday and has achieved so much in charity runs in the past, before my life was flipped upside down, I was over the moon. I didn't think I would ever be able to run again!
I also decided to set dates and goals for the future and over the summer I;
- Went back to my hometown for the weekend and met up with some of my best friends for dinner, catch ups and lots of laughs after nearly eighteen months of not seeing some of them.
- Signed up to a reiki course and retreat; spread over each month of 2022.
- Signed up for a half marathon in 2022 to raise money.
- Donated money to Four Paws for their amazing work to protect and rescue animals around the world.
- Booked a family holiday for the four of us in Portugal for April 2022.
- Went swimming with my boys and was able to push my body to swim four whole lengths.
- Applied for a course in child counselling.
I'd like to elaborate on the last point; through the support group of those suffering from SCT, I found that there was several children, who's parents were on the group, suffering from the same chronic pain that I was, due to their SCT surgery, but as a child, which is completely unfair. Alongside that, something sparked in my head how children could suffer the mental health issues that go with chronic pain, along with children without pain who are suffering for other reasons, that would need or would like someone to talk to in a safe place, like a school. I did some volunteer work with Childline and the NSPCC a few years ago and children's mental health and safety is incredibly important; as we know, not all children have the best start in life and there isn't always the funding to employ someone to listen as a councellor within a child's safe environment. Therefore, when I'm stronger, I wish to give back, volunteer and use the skills I have and will gain, on the day of the week that I do not work, to provide a service to help any children suffering with mental health.
Through my connection's, I was put through to an incredible charity who offer courses, training and placements to work alongside children and I applied with my first course beginning in September this year.
Back to my back - I spoke to my pain specialist today. I explained where I was at with the chronic pain and how I was working on my strength and goals. He told me how there were still options going forward, each with their pros and cons;
- Increase my Pregabalin pain medication and add alongside another medication which is used as an anti depressant (apparently its a terrible anti depressant but good with pain which is why I'm not naming it here) and this medication works really well with pregabalin. However I would have to come off of my Citalopram which I use for PTSD and instead be referred to a pain psychotherapist who he believes can change the way you see your chronic pain. From 'The pain is always going to be here and my life is over' to 'The pain is in the background but I'm living my life'.
- Go under another procedure, similar to the last one I had, whereby they increase the temperature to 90 degrees inject with steroids' and anesthetic and disarm the nerves. This has 60% success rate and if so would work for a year.
- Procedure number two would be to inject electros into the raw nerve endings where my coccyx was to almost spark them up. This also has 60% success rate and would work for around 18 months.
I have a lot of research and thinking to decide what route is best to take for the next part of my recovery, taking any setbacks into consideration and deciding if I really want a fifth operation or procedure under anesthetic.
As a final note, on the chronic pain and SCT subject; one day this won't be about me, this blog will still be here and I will have taken whichever route to manage the pain and live my life. I hope this was all for a reason and I hope that one day, my story and my journey will help someone in the future who may just go through the same, or similar experience that I have.
If that has happened and you're reading this from the future - you've got this! x
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